5/02/2008

Scan/Pain update

Scans - Max had a CT/MRI on Wednesday night. He also had a bone scan on Thursday morning. Results show that primary areas of new concern are his lungs and skull. The hilar mass has grown from 1.7 to 2.1cm. While not "huge", it becomes now a top candidate for radiation once we get Max's pain under control. The skull growth seems to be getting larger too. I swear I can see it now on his head. A slight, raised egg shape fairly symetrically aligned in the middle of his skull. It also appears to be growing inward as well as outward from his skull.

Max's pain is more under control due to better management of his morphine drip and PCA bolus. The real Max came out today, manifesting itself first this morning. This afternoon he played video games and hung out with Hannah and Nic for a bit. He still has to be "in control" during radiation, which means some screaming, lots of crying, and lots of direction to everyone, "turn off the music!" "stop talking!" and more. We let him get away with it as he deserves to be in control of something.

The next few days will determine when Max can come home. Criteria basically are ability to manage pain on home meds. I'll leave my more emotional thoughts for later. Let me just say that being with Max since yesterday afternoon has been both tremendously rewarding and extremely sad. I am so proud of him, his manner of acting and how he wants to be better. You should have seen him push himself to load his body onto the ambulance gurney. He gave perfect directions on where to place the equipment to ensure maximum possibility of success. And yet I have to carry him into the bathroom as he can't walk more than a step or two. He is truly amazing and I am honored and humbled to be his dad.

7AM this morning. the green button you see is his pain button which allows him to give himself a small boost of morphine every 10 minutes if needed.

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comments:

Thank you for taking the time to update as I am checking your blog every so often to see how Max is doing. Very proud of Max. My husband and I always talk about Max as being so inspirational. Yet such a burden for such a little one. Hope he will be able to come home soon. When he is in the mood to receive friends, please let us know and Kent, Sam, and I will drop everything to go see Max. Shiho

Almost everyday I start typing something to say and then erase it because I do not have the words to express the immense sadness I feel for you right now. Your strength is amazing...I am praying for a miracle for you-and for Sam. No parent should ever have to watch their child suffer in the way that you are. Just know that there are people all over the world who think of you and pray for you each step of the way.

Thank you for the detailed update. I've been thinking for over 2 hours of what to write and still am frustrated that words do not suffice. Wanting Max and you all home and in comfort. I keep thinking about a sign I saw: Believe in Miracles. Praying for the miracle and not giving up on that! xolisa

I read this blog every day, and every day I cannot come up with words to express my feelings for you and your family. I'm going to give it a try today...

My oldest is 6 year-old Gabriel (you met him at the DJ reunion in 2002 when he was a newborn, do you remember?), and every time I finish reading your blog I give him and his little sister a big bear hug and tell them how much I love them. They look at me like I'm a little crazy since I usually have tears in my eyes at the time, but they just tell me they love me too and go back to their playing. :-)

Can they ever know how much we love them and what we would do for them??

You are setting such a wonderful example of love and devotion for your children, not to mention the rest of us. Please tell Max that more people than he could possibly imagine are praying for him and all of you. He is in my thoughts and prayers every day, and I look forward to meeting him someday and watching him and my son pal around together!

Melissa & Andy...I just saw this blog for the first time a couple days ago and can't take my eyes off it now. I am so amazed at your strength, and so sad for your beautiful little boy and everything he has had to go through. Thank God he was given the two of you as parents & his darling brother & sister to love and support him. I can't even begin to imagine what you are all going through, but I just wanted you to know that 1 more family is now thinking about you and praying for Max and a much-deserved miracle! You are all an inspiration to us and we will keep you in our thoughts & prayers everyday.Tifani BrakkeSan Juan Capistrano, CA

I spoke with Lisa early this morning and she brought me up on the latest about Max. I have gone about my day..or tried to..I can't get Max off of my mind, and what you as parents are going thru. As parents you are truly amazing and brave. I know this is breaking your heart..as it is to many of us. I still believe in miracles..never, never, never give up! xo Linny